As writing coach and theme consultant Teresa Jade LeYung, I ask my clients: “What does your main character want?”

There is always something! Could it be that your Hero cannot accept what is happening to her/him? Does he/she want life the way it was, not the way it is?

That is my father’s dilemma. He has lost control over his day-to-day activities. Ever since the hospitalization for Aspiration Pneumonia and urinary tract infection in July 2018. Ever since he could no longer live by himself.

No more going to the hallway or balcony with his walker to exercise or taking the elevator to go to the mailroom whenever he wants to. No more watching his Cantonese television programs with his girlfriend who lives in the building. No more telling his caregiver to stop by the grocery store and bring him a particular fruit or a Chinese pastry he is craving. No more quarterly appointments with his UCSF neurologist or UCSF hi-tech physical therapy for movement-disorder. What irony – the appointments he had labeled “unnecessary” and “there’s nothing wrong with me” are now out of reach and “Why can’t I go?”

When nursing home staff members ask him “Do you want anything? Do you need anything?” he raises his left hand to gesture “No” and smiles.

When I am with him, occasionally he will tell me in Cantonese: “I don’t want to stay here.” (I think to myself Oh, Papa, of course. You were independent, in spite of Parkinson’s Disease, in your studio apartment. Aspiration Pneumonia and urinary tract infection created your decline and now you are in a nursing home, in a room with 2 other residents, no furniture of your own. I am sad for you. But, I know that you are safe and well cared for by dedicated staff. You are a lucky guy.)

I do not lie to him. I say: “This is your home now. Nurses and CNAs take excellent care of you. You are safe here. You have friends here. If you exercise and get strong to the point that you can live on your own again, then, I will help you find another one.” I reinforce my words by taking out a green exercise band from the top drawer of the nightstand.

I had bought the green band when I was getting physical therapy for my plantar fasciitis. Last month, I found the band, and used a thick permanent marker to write my father’s name on it. [ If you don't put your name, room and bed number on an item, that item is likely to disappear. Even if everything were labeled, staff and residents would still experience "missing items."]

Papa is in good hands with the nursing home staff. And, since November, he’s been receiving visits from a nurse, a chaplain and a social worker from Hospice By The Bay. Also, he gets visits from former caregivers (with help from my sister, I can afford to pay them to visit), his daughter-in-law, his grandson, his girlfriend, a few other people, and me (his representative and advocate).

Who else feels loss of control? Me. When I see Papa not practicing safe eating behavior.

What is safe?

- Papa sits upright and is fully awake (should not be putting food or drink into his mouth if he is slouching or sleepy).

- Eat slowly. He uses a teaspoon to put food or thickened liquid into mouth. Chew. Swallow. Swallow again. Say “AAH” twice. If you don’t hear a clear AAH, that means food/drink has not cleared past the throat.

- Do NOT tilt head backward when swallowing (head-tilting increases risk of choking and aspiration)

Oh, how I get exasperated when I find out that someone gave him food that hasn’t been pureed by dietician or liquid that hasn’t been properly thickened by his nurse. Last month, two other residents gave him something to chew (Chinese chew); the nurses explained to the two nice people that my father cannot just chew, that he has a swallowing problem, that he could accidentally swallow the food. The residents don’t understand that another episode of aspiration-pneumonia could be fatal. They can’t empathize.

That’s another question I ask my writing-clients – “Which characters are sympathized and which ones are empathized by your narrator?

I am indeed grateful that my father likes the staff at the nursing home, and the meals served to him, and that he gets to walk with his walker about 5 times a week with the CNAs who are especially trained. I am indeed grateful to everyone in his life and mine.

HAPPY LUNAR NEW YEAR 2019!

I wish everyone safety, abundant joy, and excellent health.

Sincerely,

Teresa Jade LeYung

Teresa Jade LeYung – founder of Love Made of Heart (aka Teresa LeYung-Ryan) speaks openly through her writing and advocacy, her immigrant experience, and her knowing beauty. As an author, a story consultant, and a found-object artist, she empowers women to transform their own stories and is often quoted as saying: “You think beauty, You are beauty.”

I (Teresa Jade LeYung) write to you not as a novelist, theme consultant or found-object artist but as a memoirist, daughter of Mr. Leung, and a witness to joy and despair and a whole lot of kindness.

Papa was doing fine, as fine as a 84-year-old fellow with Parkinson’s Disease (and Diabetes and hypertension) could do. Just four months ago, he was using his walker several times a day … to go from his apartment to the balcony on his floor and to the courtyard in the senior building he lived in. To show off in the hallway, whenever a caregiver was nearby (and I have photos to prove this), he would abandon the walker and use the handrail to traverse the seventeen feet to the door of his apartment.

On July 19, around 5:00pm while I was away on a writing retreat with two dear friends/colleagues, my sister (who was here for the summer) called me to say that paramedics were taking our father to an E.R.

A few days prior to this one, his caregivers had been reporting (in Cantonese) that our papa was “looking sad”. That morning of July 19, caregiver Mrs. G. had reported to my sister that Papa was feeling dizzy. When my sister called me, my advice to her was to ask questions: “Had Papa eaten breakfast? Had he been drinking water everyday? What was he doing before feeling dizzy?” He would be seeing his primary care physician that afternoon at 4:00pm … Well, our papa was in no condition to go to the appointment. His primary care physician instructed my sister to call 9-1-1.

In E.R. and the hospital, our papa was being treated for pneumonia and urinary tract infection.

Pneumonia. When two friends heard the word “pneumonia” they gently prepared me for the worst case scenario. Well, Papa has beat the odds before.

He had aspiration pneumonia (probably caused by food or water going down the windpipe which led to bacteria infection).

And, he was fighting a urinary tract infection.

July 22 (the day that my sister flies home), Papa is transferred to a skilled nursing facility. He had bounced back before, twice last year – dehydration and falls. This time is different.

My papa is not Mr. John Pepper (the hero in Chapter 2 “The Man Who Walks Off His Parkinsonian Symptoms” in the book The Brain’s Way of Healing by Norman Doidge, M.D.). Papa is his own hero, winning smile, flaws and all.

Papa Makes Decision “Where Do I Go Now?” After Hospitalization. While In Skilled Nursing Rehabilitation.

August 7, I asked the Director of Social Services at the skilled nursing facility where Papa was at…

“Could we please have a meeting, with a Cantonese-speaking interpreter, so that my father can hear in his native language…what his choices are when he is discharged? I want him to make his own decision. He’s been asking me to help him go home. He needs to understand what is happening.”

Miracles involving my father also involves the ticking of a clock.

The meeting would take place that afternoon. I asked dear friend Sasa to go with me (I needed someone to witness my role). The meeting would take place after Papa has his lunch and before my friend would need to leave at 2pm.

Staff members at this institution are pulled in various directions during a work day. The Director of Social Services was most accommodating. Sasa and I arrived at 12:30, patients were waiting for lunch which was served later than usual today. 1:00pm Papa’s puree and “controlled carbs” meal arrived (looks delicious, really).

At 1:40pm all the characters for the scene were in place – Papa; director of social services; interpreter who is also activities director; my friend Sasa; Papa’s caregiver Mrs. G who was visiting; and me.

What are the 3 options when skilled nursing facility discharges Papa?

Go home? He was receiving 5 hours/day of care through IHSS. He now needs 24-hour care. Who will pay for the 19 hours each day? His monthly income from Social Security is approximately $1,000; $300 of that goes to paying rent of a studio apartment in a senior housing; the balance pays for food, hygiene products, telephone, TV, SF Paratransit. My sister and I can contribute up to $700/month. Care-giving costs $35-$40/hour; most agencies want a 4-hour minimum each day; our $700/month would buy approximately 18 hours.

Accept a Medi-Cal bed in a nursing home for long-term care. (If Papa were to private pay, the cost of nursing home care would be more than $300/day.) Because he has Medi-Cal (thank God), he would authorize Social Security to transfer his monthly income to the nursing home. http://www.canhr.org/factsheets/medi-cal_fs/html/fs_medcal_overview.htm Medi-Cal is a combined federal and California State program designed to help pay for medical care for public assistance recipients and other low-income persons. There are 3 of these beds (vacancies) in the facility right now, on the nursing home floors.

… to improve swallowing and lessen the risk of aspirating. These could include dietary modifications — such as thickening liquids — and/or behavioral strategies, such as avoiding drinking through straws, tucking the chin to the chest when swallowing or taking smaller bites at slower intervals.

Since 1983, California Advocates for Nursing Home Reform (CANHR), a statewide nonprofit 501(c)(3) advocacy organization, has been dedicated to improving the choices, care and quality of life for California’s long term care consumers. Through direct advocacy, community education, legislation and litigation it has been CANHR’s goal to educate and support long term care consumers and advocates regarding the rights and remedies under the law, and to create a united voice for long term care reform and humane alternatives to institutionalization.

by Teresa LeYung-Ryan

This is 3 of 4 of my blog posts entitled “Parkinson’s Disease, My Chinese Papa, and My practicing The Four Agreements”

I didn’t know that I would be enjoying my new part-time job as my father’s exercise coach, appointment escort, and advocate OR that I would be practicing The Four Agreements (from Don Miguel Ruiz’s timeless book).

Agreement #3 – Don’t Make Assumptions

Extraordinaire Physical Therapist Brenda had taught my papa how to retrain his brain to turn Parkinson’s shuffling into “pick up foot” and “heel first, then toes” walking. Papa works hard at this. He holds onto the handrails outside his apartment when he practices what I call “fancy walk.” However, when we leave the building with his walker, his walking regresses to shuffling. I assumed that Papa was uncooperative. That is until three days ago…when I put myself in his shoes.

[ According to http://www.parkinson.org/understanding-parkinsons/what-is-parkinsons/ Parkinson’s disease (PD) is a neurodegenerative brain disorder that progresses slowly in most people… a person’s brain slowly stops producing a neurotransmitter called dopamine. With less and less dopamine, a person has less and less ability to regulate their movements, body and emotions.]

If Papa is pushing a walker (one type of movement), how does he concentrate on picking up his feet (another type of movement)? I asked Brenda to step out onto the sidewalk with us and teach new tricks.

She said to Papa: “Relax your arms on the walker. No need to strain yourself. Do concentrate on heel first with each step. I’ll put tennis ball slider feet on the rear legs of your walker to reduce the friction.”

This was Brenda’s last session in this round of physical therapy ordered by Papa’s neurologist. What other concerns to tell her? Oh yes, Papa coughs when he takes his pills. Aiy yah. I assumed he was being Mr. Macho, downing four pills at the same time. Brenda had the answer. “Drinking water when taking pills, coughing? Water is going down the wrong pipe. Add a thickening agent to liquids to reduce the risk of choking. And, sit in an upright position. Do NOT tilt head back.” I must ask her what kind of thickening agent.

[ According to https://www.michaeljfox.org/foundation/news-detail.php?swallowing-and-parkinson-disease …. Difficulty swallowing, called dysphagia, can happen at any stage of Parkinson disease. Signs and symptoms can range from mild to severe and may include: difficulty swallowing certain foods or liquids, coughing or throat clearing during or after eating/drinking, and feeling as if food is getting stuck. As the disease progresses, swallowing can become severely compromised and food/liquid can get into the lungs, causing aspiration pneumonia. Aspiration pneumonia is the leading cause of death in PD. [....]

Because Parkinson disease is progressive, swallowing abilities can change over time, underscoring the need for early intervention and frequent follow-up. Sometimes the signs of a swallowing disorder can be subtle, so it is important to be vigilant. If you think you have difficulty swallowing, ask your physician to refer you to a speech language pathologist for a swallowing evaluation.]

Gee, Papa is doing hard work. I’m very proud of him. My practicing the four agreements is also hard work. I do believe that Mom is proud of me, and, if Papa knew how much I’m learning, he would be too.

To share your comments, please click on the blue title box on top of this blog post, then scroll down, fill in the boxes, and click “submit” . . . Thank you so much!

· Love Made of Heart: a Daughter Finds Herself Through Witnessing Her Mother’s Mental Illness (novel used in college classes, recommended by the California School Library Association and the California Reading Association, and archived at the San Francisco History Center);

· “Talking to My Dead Mom” Monologues (the first monologue received an award from Redwood 10-Minute Play Contest and was staged at the 6th Street Playhouse in Santa Rosa, CA);

· Coach Teresa’s Blog (which attracts tens of thousands of writers) at http://lovemadeofheart.com/blog/ helps writers build their platforms before and after publication